Blog > Thoughts > Sean's Thoughts > Is It Moral (Or Ethical) For Us To Walk At All?
Is It Moral (Or Ethical) For Us To Walk At All?
Written by Sean on Friday, July 30, 2010
I spent most of the day doing chores, and walking to do these chores. At some point during the day I was reminded of a conversation I had with a woman who has osteogenesis imperfecta, and knows about BIID. Mostly, she gets it, but she has a few issues. One of these issues is the fact that some of us do walk. If we need to be paralysed, and use a wheelchair to help with BIID, we should be consistant and never walk, they say.
Ok, so it isn’t the first time I’m talking about this. But it is an important topic I think. It is one of these things that constitutes a major barrier to understanding for many people with disabilities – even those who get it. Some would have us think it is not moral or ethical for us to walk. If we’re going to "pretend to be disabled", we need to do so 100% of the time, no matter what. "It’s not fair" otherwise. People are upset that we get to pick and choose "when we’re disabled" and not.
The thing is, I could have done about 85% of what I did today from the chair. I know, because I’ve done these kind of chores from my wheelchair before. The remaining 15% could have been skipped, they were not mission critical. Or I could have asked a friend, or hired someone to do them. I made a conscious decision not to use my wheelchair because it was faster, and more efficient not to. Yes, I chose not to use the chair. Yes, I have a choice.
And I’d rather be paralysed and not have had a choice at all in the matter.
But since I *do* have a choice, I chose speed and efficiency.
I am constantly juggling the trade-offs: physical energy & well-being vs emotional energy & well-being. Using the chair is good for the emotional well-being part of the equation. Not using the chair is often (but not always) good for the physical well-being. That is what I was balancing today.
The decision had nothing to do about morality, ethics, or fairness. In many ways, it was an egocentric decision. My use (or non-use) of a wheelchair today had absolutely no impact on anyone – I was not seen by anyone.
And then there is Chloe, who goes on wild hikes. If she were paralysed, she could not do these hikes. Is it fair, or ethical, or moral of her to go on these hikes? Why not? She also juggles emotional vs physical. Granted those hikes are rough on the physical aspect. If she didn’t go hike and spent the same amount of time in a wheelchair, her body would be much better off. But hiking is good for her soul.
We *all* play these trade-off "games". It’s just that some are aware of it, others, not so much.
Tags: Ethical, Fair, Moral, Walking, Wheelchair
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10 Comments
Sorry, I forgot a sentence.
After “People just love to judge others” there should come this sentence:
“And people want others to be very consequent: “…”
I have given up using a crutch at work. People would run to doors in front of me, hold open doors I wouldn’t have gone through anyway. In general, it was about them feeling good about helping me instead of just leaving me alone and letting me do what I need to do.
Yes, my hip and back still hurt but apparently it’s much more acceptable for me to limp than it is to use a crutch. Grrr.
People who have a physical impairment do the same trade-offs. The people who want to put it down in black and white, walk/no walk, clearly have no experience of disability anyway.
I have chronic pain. Most of the time I try to minimise my pain, by avoiding actions that are damaging, and using aids. But sometimes, I want to put on a pair of 4-inch heels and go out with my friends. I pay for that later, by being in more pain and less able.
EVERYONE makes these trade-offs, regardless of whether they have BIID, an impairment, or even have no medical issue at all. Everyone weighs up having a drink with friends against how early they have to be up the following morning.
With BIID, even if we wheeled full time, we wouldn’t get all the benefits. The legs still work. The legs are still there. We wake up in the morning and wheeling or not, we are reminded of it. Thus we balance the benefits of wheeling and non-wheeling.
Being around people with MS teaches me to be more comfortable with my working legs. Because I see how they use the chair, how they can stand sometimes and then they will sit down again and wheel, I can see that my presenting is that of a neurological disorder. It’s kind of comforting even if MS and BIID are radically different neurological disorders.
My BIID is about me. It is not about anybody else’s impairment. It is not about anybody else’s BIID. So long as I am not doing harm to anybody else, the way I treat my BIID does not have moral or ethical implications. There is a difference between paraplegia and paraplegic manifestation of BIID. I am not in the slightest bit delusional about this. As I have said before, I am treating BIID, not paraplegia. If someone finds that simulating paraplegia 100% of the time is an effective treatment for their BIID then that is just fine, but it doesn’t have to be that way for everyone.
There are a number of things I do in order to treat my BIID. Paradoxically, walking is one of them. Specifically, a strenuous hike will temporarily increase the degree of monoparesis in my left leg. It gives me a sense of relief to be reminded that I have some real physical impairment there, however little it may be. So, strenuous hiking is indeed one of the ways in which my BIID is alleviated. Just because someone with paraplegia would be unable to perform this activity is absolutely no reason for me to withhold a treatment for my own condition.
As Sean suggests, I also have other reasons for hiking. One of these is that I find it to be a good treatment for depression. The association between exercise and alleviation of depression is well known. “Exercise with your arms instead”, you may say. Sure, but then I would have to endure a massive amount of fibromyalgia pain. No thank you! The reason I don’t play racketball or tennis any more has nothing to do with being in a wheelchair.
Treatment of fibromyalgia is in fact another reason for me to hike. This also might appear paradoxical. Falling over on hikes can both trigger and exacerbate a fibromyalgia episode. It has happened countless times. On the other hand I found out a long time ago that prolonged exercise, such as a substantial hike, can end a fibromyalgia episode. I had been having significant problems with my left arm, necessitating a wrist brace, for weeks prior to my last big hike. While I did take several falls on that hike, none of them resulted in any injury and no fibromyalgia was triggered. However, that long lasting episode ended. I won’t go into the physiological explanation of this, as it is both long and irrelevant. The joy of being able to wheel without a wrist brace and relatively pain free is amazing.
I would have to contend that anybody attempting to make me feel guilty about treating my physical and psychological ailments does not hold the moral high ground.
More importantly, it’s nobody else’s bloody business.
7 On 30 July, 2010, Sean said:
@Phil, you said that we don’t do any harm to anybody whether we wheel or walk, and conclude it’s none of their business. I agree with that in principle. A part of me can’t help thinking that it is partly their business. People do react to what we do. They can’t help it. It’s human to react. And in that way, it is their business. Of course, they have a “choice” in controlling their reaction. Yet, it’s not that easy. Ultimately, it’s not “our fault” if they ract negatively. But….
@Gravity, You’re right, everyone does these kind of trade-offs. I’m glad you brought it up :) As for people not having experience of disability… The particular person I am thinking of does have a good experience. this person was born with a congenital disability, and has worked in the Independent Living movement for years. And she *gets* BIID, in ways that many people don’t. I guess this walk/no-walk thing is just a tricky one.
@Elisabeth, indeed, using a wheelchair is NOT being paralysed. And while it gets us closer to the experience, it doesn’t give us the full picture.
@Chloe, I really believe your statement of using a wheelchair to treat BIID and not to treat paraplegia is an important one. Not that a wheelchair “treats” paraplegia, but… Yeah, that statement is mission critical to understanding a lot of what we do.
Yes, we all tend to like clear distinctions, black and white, a clear, but not realistic picture of the world in its shades and shadows, colours and x dimensions…
People are shocked by and maybe even fear BIID. So maybe they want us to make a clear “cut”.
Well, most of us would love if a surgeon made a clear cut… :-)
If it is not fair for me go on a hike, then it must also be not fair for an AB without BIID to go on a hike. It is not fair that I have BIID and they don’t.
A few years ago I asked my friend how things with MS were going. He replied that when he wakes up in the morning he does what he can do and he doesn’t do what he can’t do; and that is true for everybody. I have always respected his wisdom.
10 On 31 July, 2010, Z said:
I agree with Chloe. If people with BIID shouldn’t be allowed to function at their current ability level- then they should make it so that people with BIID can get the “disability” they need!
It isn’t fair that people with BIID have to suffer the pain of BIID, either. That isn’t completely fixed by, in this case, never walking. For some people it can make it worse. THAT isn’t fair to ask us.
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1 On 30 July, 2010, Phil said:
Judging itself is not moral/ethical.
We don’t do any harm to anybody when we wheel or walk. So it’s none of their business.
And people who have listened and tried to understand don’t say we shouldn’t “cheat” and stand up, walk etc.
We have BIID. It’s a suffering, sometimes a torture. Why should be deliberately add to the pain?
People just love to judge others. If you want to be paralysed, then pretend to be one full time.
Maybe one reason is that they think it’s just a fantasy, and reality would cure us. They think we just play and don’t take it seriously. They think we don’t know what we really want, what an impairment really is like, and if we knew, we would no longer want it.
We just have to tell them that this is not the case.
Doing what you want to do right now and here, that’s freedom, that’s life. But who really loves the freedom of others? Who can really enjoy to see others live their lives like they want?